Faculty Bibliography

BACKGROUND:Over the past decade, medical care has shifted from institutions into home settings-particularly among persons with dementia. Yet it is unknown how home-based clinical services currently support persons with dementia, and what factors shape access. METHODS:Using the National Health and Aging Trends Study linked to Medicare claims 2012-2017, we identified 6664 community-dwelling adults age ≥ 70 years enrolled in fee-for-service Medicare. Annual assessment of dementia status was determined via self-report, cognitive interview, and/or proxy assessment. Receipt of four types of home-based clinical care (home-based medical care (HBMC) (i.e., nurse practitioner, physician, or physician assistant visits), skilled home health care (SHHC), podiatry visits, and other types of home-based clinical services (e.g., behavioral health)) was assessed annually. We compared age-adjusted rates of home-based clinical care by dementia status and determined sociodemographic, health, and environmental characteristics associated with utilization of home-based clinical care among persons with dementia. RESULTS:Nearly half (44.4%) of persons with dementia received any home-based clinical care annually compared to only 14.4% of those without dementia. Persons with dementia received substantially more of each type of home-based clinical care than those without dementia including a 5-fold increased use of HBMC (95% CI = 3.8-6.2) and double the use of SHHC (95% CI = 2.0-2.5). In adjusted models, Hispanic/Latino persons with dementia were less likely to receive HBMC (OR = 0.32; 95% CI = 0.11-0.93). Use of HBMC, podiatry, and other home-based clinical care was significantly more likely among those living in residential care facilities, in the Northeast and in metropolitan areas. CONCLUSION:Although almost half of community-dwelling persons with dementia receive home-based clinical care, there is significant variation in utilization based on race/ethnicity and environmental context. Increased understanding as to how these factors impact utilization is necessary to reduce potential inequities in healthcare delivery among the dementia population.

BACKGROUND:Homebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic. DESIGN/SETTING:Cross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA. PARTICIPANTS:A total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020. MEASUREMENTS:Homebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts <once/week), as well as loneliness, anxiety, and depression. RESULTS:Among homebound older adults, 13.2% experienced limited social contact during COVID-19 vs. 6.5% of the non-homebound. Differences in social contact were greatest for contacts via email/text/social media: 54.9% of the homebound used this <once/week vs. 28.4% of the non-homebound. In adjusted analyses of those without limited social contact prior to the pandemic, the homebound had higher but not significantly different odds (OR 1.83; 95% CI 0.95-3.52) of limited social contact during COVID-19, with increased risk among the older individuals, those with dementia, and those in assisted living facilities. Of the homebound, 13.2% felt lonely every/most days during the pandemic vs. 7.7% of non-homebound older adults. Homebound and non-homebound older adults reported similar rates of increased loneliness, anxiety, or depression during COVID-19. Fewer homebound older adults learned a new technology during the pandemic (16.3%) vs. non-homebound older adults (30.4%). DISCUSSION:Isolation among homebound older adults increased during COVID-19, partially due to differences in technology use. We must ensure that homebound persons have the connection and care they need including new technologies for communication during and beyond COVID-19.

For home care agencies and aides, the death of clients has important, yet often unrecognized, workforce implications. While research demonstrates that client death can cause grief and job insecurity for aides, we currently lack home care agencies' perspectives on this issue and approaches to addressing it. This study uses key informant interviews with leaders from a diverse sample of eight New York City home care agencies to explore facilitators and barriers to agency action. We found that agencies engaged primarily in a range of informal, reactive practices related to client death, and relatively few targeted and proactive efforts to support aides around client death. While leaders generally acknowledged a need for greater aide support, they pointed to a lack of sustainable home care financing and policy resources to fund this. We recommend increased funding to support wages, paid time off, and supportive services, and discuss implications for future research.

As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

Despite high-intensity caregiving support, those with dementia may experience adverse consequences because the care they receive does not match their care needs. This study evaluates the relationship between content of care (i.e., specific assistance with toileting) and adverse consequences (i.e., toileting accidents because no one was there to help) in a population of community-dwelling Medicare beneficiaries with dementia and impairment in toileting enrolled in the National Health and Aging Trends Study (NHATS). Only two thirds of individuals received specific assistance with toileting, which was associated with a reduced risk of adverse consequences related to toileting in a multivariable model adjusted for key variables including high-intensity caregiving (odds ratio [OR] = 0.36, 95% confidence interval [CI] = [0.23, 0.58]). To ensure care meets the needs of those with dementia living in the community, it is important to consider not only the quantity but also the content of care received.

PURPOSE:Older adults with dementia often rely on both paid caregivers (ie, home health aides, personal care attendants, other direct care workers) and family caregivers (ie, spouses, children, other unpaid individuals) to remain in the community. This study conceptualizes paid caregivers as part of the collaborative dementia care team and examines the association between receipt of paid care and primary family caregiver experience. METHODS:Using data from 3 waves (2011, 2015, and 2017) of the National Health and Aging Trends Study linked to the National Study of Caregiving, community-dwelling Medicare beneficiaries aged ≥67 years with advanced dementia (n = 338 observations) were identified. Primary family caregiver experiences were compared among those with zero, part-time (<40 hours/week), and full-time (≥40 hours/week) paid care, and multivariable models were used to evaluate the associations between full-time paid care and family caregiver strain (eg, being overwhelmed due to caregiving) and activity restriction (eg, being unable to work for pay due to caregiving). FINDINGS:About one half of the community-dwelling older adults with advanced dementia received paid care: 30% had part-time paid care and 18% had full-time paid care. The experiences of family caregivers of those receiving part-time and no paid care were not significantly different. After adjusting for family caregiver and care recipient characteristics, receipt of full-time paid care was associated with a nearly 70% reduced odds of having activity restrictions due to caregiving (odds ratio, 0.31; P = 0.01) and a reduction in mean caregiver strain score (-0.73; P = 0.04). There was no statistically significantly association between the odds of high caregiver strain (score ≥5) and receipt of paid care (odds ratio, 0.65; P = 0.33). IMPLICATIONS:The provision of paid care for individuals with dementia in the community may benefit family caregivers. Future work should acknowledge the important ways that paid caregivers contribute to outcomes for all members of the collaborative dementia care team.

BACKGROUND/OBJECTIVES:Evaluations of complex models of care for older adults may benefit from simultaneous assessment of intervention implementation. The STRIDE (Strategies To Reduce Injuries and Develop confidence in Elders) pragmatic trial evaluated the effectiveness of a multifactorial intervention to reduce serious fall injuries in older adults. We conducted multi-level stakeholder interviews to identify barriers to STRIDE intervention implementation and understand efforts taken to mitigate these barriers. DESIGN:Qualitative interviews with key informants. SETTING:Ten clinical trial sites affiliated with practices that provided primary care for persons at increased risk for fall injuries. PARTICIPANTS:Specially trained registered nurses working as Falls Care Managers (FCMs) who delivered the intervention (n = 13 individual interviews), Research Staff who supervised trial implementation locally (n = 10 group interviews, 23 included individuals), and members of Central Project Management and the National Patient Stakeholder Council who oversaw national implementation (n = 2 group interviews, six included individuals). MEASUREMENTS:A semi-structured interview guide derived from the consolidated framework for implementation research (CFIR). RESULTS:We identified eight key barriers to STRIDE intervention implementation. FCMs navigated complex relationships with patients and families while working with Research Staff to implement the intervention in primary care practices with limited clinical space, variable provider buy-in, and significant primary care practice staff and provider turnover. The costs of the intervention to individual patients and medical practices amplified these barriers. Efforts to mitigate these barriers varied depending on the needs and opportunities of each primary care setting. CONCLUSION:The many barriers to implementation and the variability in how stakeholders addressed these locally may have affected the overall STRIDE intervention's effectiveness. Future pragmatic trials should incorporate simultaneous implementation aims to better understand how research interventions translate into clinical care that improves the lives of older adults.

This cohort study compares family caregiver hours provided to those with vs without dementia during the last 10 years of life.

IMPORTANCE:A large and growing population of older adults with multimorbidity, cognitive impairment, and functional disability live in the community, but many never or rarely leave their homes. Being homebound is associated with decreased access to medical services, poor health outcomes, and increased mortality. Yet, it is unknown what factors, in particular socioeconomic factors, are associated with new onset of homebound status. OBJECTIVE:To evaluate the association between income and risk of becoming homebound. DESIGN:Observational cohort study using 2011 to 2018 data from the National Health and Aging Trends Study, a nationally representative sample of Medicare beneficiaries aged 65 years and older. SETTING:Population-based study in the United States. PARTICIPANTS:A total of 7,042 initially nonhomebound community-dwelling older adults. EXPOSURE:Total annual household income at baseline (in 2011) measured via self-report. OUTCOME:Annual measure of homebound status, defined as leaving home an average of 1 d/wk or less. RESULTS:Over 7 years, 15.81% of older adults in the lowest income quartile (≤$15,003) became homebound, compared with only 4.64% of those in the highest income quartile (>$60,000). In a competing risks analysis accounting for risks of death and nursing home admission, and adjusted for clinical and demographic characteristics, those in the lowest income quartile had a substantially higher subhazard of becoming homebound than those in the highest income quartile (1.65; 95% confidence interval = 1.20-2.29). Moreover, we see evidence of a gradient in risk of homebound status by income quartile. CONCLUSION AND RELEVANCE:Our work demonstrates that financial resources shape the risk of becoming homebound, which is associated with negative health consequences. In the context of existing income disparities, more support is needed to assist older adults with limited financial resources who wish to remain in the community.